Pages

9.30.2011

GREAT news - Quinn is definitely moving down to the 15th floor today (the recovery floor for cardiac patients). This is the next big step in her recovery - we have no idea how long we will be there. It will kind of be up to Quinn and how quickly she starts to regain normal functions. They started her on clears yesterday afternoon. Little girl was sooooo excited about her sippy cup with water and drank like she had been in a desert for 10 days - which she kind of has been! It was so fun to see her so excited to drink. I actually cried because it made my heart so happy to see her NORMAL. Once she had water then her throat felt well enough to even give me some fun babbling. Still haven't seen a smile yet but hoping for one today. I have more fun stories of what she is up to but gotta run back up to her floor for the doctors' rounds. We don't know what time we will be moved but hopefully sometime late morning.

Thank you for the prayers from yesterday - she recovered beautifully from her impromptu visit to the OR and did wonderful! All I can say is that this little girl is my absolute HERO. Her strength has been an inspiration to our entire family.

9.29.2011

So this a.m. the doctors tried to remove the 2 chest tubes Q has had in for drainage. Unfortunately, one of them is stuck somewhere in her incision/sutures. They had Dr. Fraser come in and try to remove it but he couldn't get it either at the bedside. So in order to save her massive discomfort and not knowing how & where the tube is stuck, they took Quinn back in the OR about 30 minutes ago (11:45ish, Thursday). They will have to put her under general again and there is a chance they may have to open up the entire incision and sew it back up depending upon where it's connected. We could have waited until tonight to have Fraser perform it but Dr. Heinle was available (who is a great surgeon as well), so we just went with him.

So a little hiccup and not what we were expecting, but it shouldn't be a massive deal. It just means that she won't move down to the recovery floor (15th) anytime today and she earned another overnight in the CVICU which actually is just fine by me.

Just wanted to keep you posted - just pray that all goes smoothly going under and coming back out.

Update (1:00pm) - All went well. They had to completely reopen her incision (poor girl) but they were able to remove the stubborn chest tube that was hooked around one of the wires they used to fuse her chest bone closed. They are just checking xrays right now to make sure there's no air around her lungs and then we should see Quinn in about 30 minutes or so. Thank God for the awesome staff here who moved so quickly to get this taken care of so our little girl wouldn't be set back too far in her recovery.

9.28.2011

Well, what can I say... so grateful for each and every one of you for your kind words, prayers, blessing, and thoughtfulness. I don't know how many times I can say that but I will continue to repeat it until I am blue in my face! Y'all helped us through some hard times yesterday and lifted us when we needed lifting. I have no doubt that God was working in and through you all to keep us upright.

So onto updates --- we got to see Quinn yesterday afternoon (Tuesday) about 5pm. Despite being warned of how she would look (lots of tubes, wires, breathing ventilator, etc, etc), she looked gorgeous to us. Yes, it was hard to see her all tied up like that but oh my gosh, how thankful we were to lay eyes on her. One of the first things we noticed was how beautiful her skin is now --- I knew her skin was always a bit "mottled" because of the lack of oxygen circulation & would especially look that way if she was slightly cold, but I was just so used to seeing it that it never bothered me.

Now her skin is PERFECTLY PINK and healthy. Just like it should be. I looked up at the monitors for her oxygen saturation levels like we used to everyday when she was in the NICU and saw a number that we have never seen - a perfect 99 and 100.

Tears poured down my face when I saw that. For most of her life, she has lived in the low 80s - and now my precious girl has a perfect saturation. What a miracle - and we can only pray that it continues.

We spent most of the evening just looking at her and holding her little hand - and then finally at the urging of our doctors and nurses left for a bit to get some sleep. Monday night was mostly without sleep, as Quinn did not care much for the prison-issue metal crib she was in. So with that, combined with a lack of sleep Sunday evening, then of course a very tiring day of waiting and "mommy & daddy" adrenaline flowing through our system, we were completely beat and glassy-eyed.

Thankfully we were able to get about 6-7 hours of much needed sleep which made it much easier to focus today. By the end of the day yesterday I felt like I couldn't even ask a coherent question to any of the nurses or doctors. And that's not a good sign because I am always full of questions! The best thing for Quinn is to have 2 normally-functioning parents, that's for sure.

So they did rounds this morning and everything was great for being less than 12 hours post-op. Later they actually said she was kind of "boring" which is exactly what we want to be -- completely and utterly boring the nurses and doctors!

So the big steps today - they were able to remove her from the ventilator - little Q is now breathing completely on her own!!! She is still on a little bit of oxgyen that they continue to step down and she should be off in the next 24. Now we can see that beautiful face! They were also able to remove an LV (I think that's what it was called) line this morning, and remove both of her catheters this evening. She is off all of blood pressure medications that were allowing her heart to kind of rest, so her "new" heart is doing it's job. She was on a continuous sedation and pain med drip but she is off of that now so they could get her off the vent.

She's on a sedation med now that's non-narcotic so she can breathe on her own through it. She also is still receiving pain meds to keep her comfortable and calm. So far, she has been relatively still but whenever she starts to flail, they go ahead and sedate her a little more --- their biggest goal is for her to not be in pain. The hardest part is managing waking her up and her not being in tremendous pain -- it's a tough balance but we have had the most amazing nurses & doctors caring for her. Their expertise and willingness to explain everything that's going on and tolerate all of my endless questions has completely blown me away.

As a suggestion from my fellow heart mommy friend, Lisa, we also brought up pictures of Quinn for the doctors and nurses to see so they could see Quinn in her essence, laughing, smiling, etc. What a great idea! We put together an 8x10 collage of her and Ryan, so they would know also that she is one of a pair - and that her twin brother misses her desperately and wants his playmate back! (Although I do have word that he had an excellent playdate with his friend Grayson - and some great loving by my wonderful friend Libby who took care of him all day during Q's surgery - immensely grateful!)

So bottom line: we can consider this first day post surgery a complete success. She is doing so wonderfully, it's almost unbelievable. Matt and I have been so relaxed today that I know that type of grace only comes from God. They are talking of potential move from the ICU to the 15th floor (room-in wing for cardiac patients) as early as tomorrow afternoon. Whoa! At the latest, our nurse thinks Friday. So we are trucking right along.

As they keep reminding us, we still have a tough few days in front of us --- when she is completely awake she will be uncomfortable and unhappy and certainly not on the schedule that Mommy typically has her on :) But we will get through them and prayerfully, be out as soon as a week from now!

All I can end this with is a simple "thank you". I have no other words. We are beyond blessed.

Thank you, God, for healing our sweet precious daughter and bringing us this far on our journey. Thank you for the amazing team who continues to care for her. Thank you for our wonderful friends and family who have been incredibly generous with their time, loving, and pretty much doing everything we needed.

9.27.2011

Well, sweet friends - this is going to the final update probably for the day unless we gain a bunch of energy later on.

WE ARE FINISHED. PRAISE GOD!

Quinn came off of bypass perfectly - they did the echos and tests to check the performance of the repairs and everything looked great. They were able to keep the repair of the PA instead of putting in an artificial. This was a huge prayer answered.

We met with the surgeon - he did indicate that she did great but she definitely had a very complex and difficult heart to repair. Honestly by the time we spoke with him, we were just so beat we were barely able to ask any questions or mutter anything other than say, "thank you". Because of her complex anatomy, at some point in her life she will need another surgery - but that could be years and years down the road or it could be next year, who knows. She has a "bad" pulmonary valve but it's too small to be repaired now and it's not causing any problems right now. She will be followed along for the rest of her life by a cardio team, so they will be able to time that surgery as appropriate.

BUT, let's focus on the awesome news & not the future --- this little girl came through with flying colors. She remained completely stable majority of the time, save for the very, very beginning of the surgery when she had a slightly irregular heart rhythm, but she came out of that and never experienced it again (we just found that out after speaking to Dr. Fraser).

She is doing perfect for a child who just had a 8 hour open heart procedure. Obviously, she has lots of tubes, iv's, catheters, etc. Slowly they will start removing these but nothing will likely be removed before tomorrow. Tonight especially she will remain completely sedated and not be aware of anything. She's on a good dose of pain meds and the doctors will make sure that she will not feel a thing.

God is great, all of the time. Your prayers were heard and answered --- if you ever doubt the power of prayer, please remember Quinn's story. This was a miracle girl, who just came through a very difficult surgery with absolutely zero complications. I've said it a bazillion time, but thank you so much for all of your prayers.

We will get to see our little girl at around 4:30 or 5 this evening after she is transported to the Cardiac Intensive Care Wing. I know it will be difficult to see her that way with all of her wires and tubes, but it will also be a huge relief. She is still here with us. Thank you, God.

Will continue to keep you posted after we go through our week, but promise not to EVER post 5 or 6 times in one day again, ha!

Ok - right now everything looks really good. They've called it "textbook" so far. They were able to repair NOT replace the pulmonary artery with a patch. This is GREAT news. All of the other repairs, VSD's, and the "rewiring" (I am sure there is an official word for this but I can't remember at the moment) b/w the PA & Right Ventricle has all been completed and are successful at the moment.

They are in the process of re-warming her and then they will turn off bypass and get her heart started again. This is the next HUGE step. We need the heart to come back and blood to start pumping adquately through the various chambers and vessels. They will take multiple echos and pictures to see how the patch on the PA is holding up. If they are satisfied with the repair, then they will begin to close everything up. We will have another update at 3pm. If all goes well, we have about 2 more hours of work to do, then she will be stable enough to move to the CVICU & then Matt and I will be able to see her approximately 1 hour after that.

Please pray specifically that coming off the heart/lung bypass goes smoothly and without problems and that Quinn remains stable. Please also pray that the patch looks satisfactory. If it doesn't, they will turn bypass back on and start over on that portion of the repair. PRAISE God for textbook so far. He IS always faithful even in times of despair and heartache.

We are safely on bypass and Q's precious heart has been stopped. They have cooled her body down to 26 degrees celsius (about 80ish degrees F). All oxygne flows to the major organs looks good - and brain function especially looks great. She continues to remain perfectly stable and has given them no scares. Praise God.

They are now in the process of figuring out the repair and how they will go about it now that they can see everything. The will tackle the VSD first, and then once they finish that, they will look at her Pulmonary Artery & see how they want to redirect the blood flow there with her right ventricle, as well as open up the pulmonary artery. The next crucial decision by Dr. Fraser will be whether to replace the PA with artifical equipment (something she would grow out of & need at least 3 more repairs) or whether they can fix her "original equipment." Obviously the best course of action would be repair. Please be in prayer for Dr. Fraser as he will be making the decision shortly.

We still have several more hours to go. Our entire TQ up at TCH thanks you all - we are having a blast looking at the facebook page & seeing all of your pictures in green & all of the fun pictures that have been sent via text or email.

Things are progressing well but they are definitely moving slow and cautiously. Her vitals are great and she remains stable. They will be putting her on heart-lung bypass in the next 15-20 minutes. Please pray the process of that goes smoothly. That's the next big hurdle in where they will stop her heart and all blood flow to it. We need to make sure that blood flows remain good to all her other vital organs like her kidneys, lungs, and brain.

Once she is on bypass, they will start making plans for the repair. We still won't know anything in regards to the repair for several hours. The next update should be that heart lung bypass went well and then we'll probably be a little silent after that as they determine the best course of action.

Thank you for your continued prayers & covering us today. We are so thankful --- thank you to everyone who has sent emails, texts, facebook messages, etc. I will do my best to get back to each and everyone of you soon, but please know we have read every message, smiled at every picture, and treasure each one.

Just wanted to let you all know that Quinn was taken back at 7:22am this morning (Tuesday). She was happy when they left, especially after they gave her the "good stuff". She had an iv already so it hit hard and fast. :)

Last night was a rough night - Quinn was completely thrown off by her day and we all got very little sleep, maybe 3 hours or so and not consecutive by any means. But Quinn was still playful this morning and asked for hugs by all who saw her. Everyone commented how sweet and fun she was, and I must agree. For someone who hasn't had food since 8pm last night and very little snooze time, she was in remarkably good spirits.

This hand off was immeasurably harder than for the cath last week. The risks are extremely high and the surgery will be incredibly tedious. Yet, we place her God's arms this morning. Let His Will be done.

Will post again when we have an update - it sounds like we may hear only every 2 hours - surgery time is unpredictable. They now are not even giving us a window of time, only that we should expect all day. We were reminded again by the doctors & nurses this morning how incredibly difficult her case is for multiple reasons.

That's all for now. We love you & will post when we know more and know that Quinn is safely under.

9.26.2011

The day has come. This morning (Monday), bright and early, we head down to the med center for pre-op admissions. Why we have to be down there at 8am for a Tuesday surgery is still a little beyond me, but that's the way they do it so we'll play by the rules :) Prayerfully, we will finish pre-op admissions by 1pm and will be in a room on the 15th floor which will be our home until they take us back for surgery on Tuesday morning. Surgery time is scheduled for 7am.

I don't know if we are 100% ready for this, but I do know that we have done everything in our human power to prepare ourselves, prepare Quinn, love on her, love on her brother, and love each other. I know that God will meet us where we need to be met and will bring us through it, no matter the outcome.

The hardest prayer I have prayed through this prep time is let His Will be done. Quinn has always been His child, as much as I want to hold on with my death grip, she is His - we are just blessed to be her earthly parents. Thank God for that.

We will keep you posted as much as possible. It will be a very LONG few days. Please pray for the doctors, nurses, staff who will be taking care of our little girl. Please also pray for the safe travels for the remaining family members who are making their way in town. Please pray that Quinn will be comfortable and not in any pain, and that she will not feel any anxiety.

We love you all. We are amazed at your prayer faithfulness and are blessed beyond measure.

9.24.2011

Seemingly as I was reading over my last few posts, poor Ryan hasn't had much written about him - understandably so with Q's situation - but I NEVER want either twin to feel abandoned or not as special as the other. We try to keep things fair and square in this house. My parents were always so good about that with my brother and I. Even at Christmas they would write one of us a check to make up the difference if the present tabulation was even slightly off. So that being said, this post is all about my precious boy and what he has been up to.

Ryan is quickly becoming the resident comedian of the house. He absolutely cracks us up every day. With fake sneezing when we say "Bless you", his "dancing", his random high pitch screaming (happy screams), and so many other things. The more we laugh, the more he does it and with much more gusto than the previous time.

He also can be very serious about things --- he takes everything in with thoughtfulness and is VERY serious about his CMT watching. Heaven forbid you try to get between him and the television when there's music on. He will push you right out of the way.

He loves to get back massages from Daddy. He will lay Ryan across his knees and beat (gently!) on his back and he just giggles and giggles.

He learned to say "Gigi" this past weekend when my mom was in town. She told us the night we came home from the hospital that she was working on it with him and he said it. I have to say I didn't really believe her because that's a tough "G" sound to make. But sure enough, the next morning, he was toddling around and said it about three times.

Speaking of toddling, he is a full-blown walker (most of the time) now. He still gets a little excited and trips up on his feet but everyday he gets a bit faster. He loves to play chase with his sister, especially under the kitchen table - and I think it's more fun now that he can run instead of crawl after her.

He is still a pretty sensitive little boy. He gets upset about the darndest things and definitely needs pats of comfort during the day. Lately it's been this toy stethoscope scaring him. He's ok playing with it but then he puts it around his neck and can't get it off and it scares him to death. The first couple of times it happened, I couldn't understand why he was running over to me crying like he had just been hit by a truck. Then I realized the problem. Yet, I still can't figure out why he chooses to play with it over and over! (On a different yet related note, he is finally over his "ball phobia". He will now happily play with all balls, including the supposedly frightening glow-in-the-dark, squishy one.

He is also getting 2 more teeth. I think that puts our count at 14. Yikes. That's definite toddler territory.

He is a Cheeto fanatic. I cannot eat my lunch in peace because he runs over everytime I open up the Cheeto bag. He then sits there and begs until I give him one, then typically he loses it to his clepto sister, who promptly yanks it from him. This usually results in a meltdown.

He is still eager to cuddle and anytime I need a hug - I know I can go pick him up and he will snuggle like no other. Love that.

He gets a s*&T eating grin on his face anytime he makes his way up to the "forbidden couch" or "chair". He looks so content and happy and foolish all at once. It's hard not to laugh at his delighted expression of making it to the top - but I have seen the end results of him toppling off, so we are working "Ryan, bottom, now!". He usually looks at me with the same ole grin and then will finally sit.

His favorite sing-song phrase to mutter over and over again is "Mund-ee, mund-ee..." I would pay good "mund-ee, mund-ee" to know that actually means. And if it truly is "Money", then someone should gently break the news to him that there is none after eating us out of house and home for the past year and a half : )

Love, love my precious boy. Oh, how my heart breaks knowing I won't see him for days on end. I know he is going to be confused, being taken care of different family members constantly --- I know they will take EXCELLENT care of him, I just wish I could magically be in 2 places at once.

Ryan, I love you so - I loved being on our "Mommy & Ryan" date today to Little Gym. To see how you have grown through that class and come to know all of the songs and how to put up your toys amazes me! You are so brazen now to climb on all of the equipment and I was so proud. You crossed a very difficult "problem solving" pass today and made it to the finish (with the bribe of the ever-faithful remote control!)

9.21.2011

So I was reading through the post I wrote when we got home late on Monday night. Wow. If any of y'all made sense of that, then bless you.

Anyway, I said I would discuss a few more details, so for those who may be interested, here's a little

more - and some pictures.

First of all, if you are a friend on facebook, you saw that our wall was coated with people taking pictures in their green supporting our little girl. I was absolutely taken aback as we were sitting in the waiting area and these pictures kept coming across my screen. Tears filled my eyes on numerous occasions as each one popped up.

And the amazing part? Most of these people didn't even know Quinn or our family. They just had heard about her story and wore green for a little girl they've never met, never heard of until recently. That's absolutely amazing to me. Thank you to all of you who spread the word about wearing green for Quinn. We will print those pictures out and keep them in our "keepsake" box that my wonderful friend Ashley got for Quinn to track her special journey.

Anyway, some of you may not know why we wear green, so here's a post describing it. This was wayyyy back when we thought we were looking at a spring surgery but the color still represents new life, renewal, healing --- plus, if you haven't noticed, our last name sounds pretty Irish, so why not green? Plus it's a pretty lucky color :)

I also promised a couple of more details on the catheter procedure & why it was so important to get that coil in place. We didn't even understand it ourselves until it was all over. When Q had her last echo, they picked up that she perhaps had a collateral vessel that had formed. This collateral vessel served no function to help her heart, but it was the body's way of trying to pump more oxgenated blood into her system. From what I could see on the pictures, it was basically pumping blood into the chambers of her heart, clouding some of the other structures. So by "coiling" it off (literally popping in a coil that looks like a little spring in a mechanical pencil), they stop that blood flow and effectively block it off. For life. So now, little one has her first new piece of hardware. Apparently, it will grow with her and should never have to be replaced. It was amazing to see the before and after pictures of it just doing it's job.

My biggest question of the day was why they wanted to take care of that vessel on Monday and not just wait until the "big" surgery. Well, first of all, it was in an area of the heart that Dr. Fraser won't necessarily be concentrating on and would have required a more extensive surgery and scar had he had to take care of it too. Also, with the extra blood it was pumping in, it would have made the surgery more difficult. So that's why a 3-4 hour procedure turned out to be a couple hours longer than it should have been.

Anyway, so that's the coil. We are immensely grateful for the cath team who were so careful to take their time and incredibly diligent about getting that thing in place. I can't even imagine the steady hands and patience you must have to do a surgery like that. And like I mentioned in our previous post, our doctor was very honest with us about how she was minutes from quitting --- she was having such a hard time getting the cath to bend in just the right way to reach the vessel and it was in a hard to reach part of her heart. It would not have been the end of the world had she not gotten it in there, but it definitely saved us from some complications next week.

She was also able to share with us some more of the detailed findings from the pictures they were able to take. An echocardiogram is good but sometimes it just can't show all of these tiny structures. So these cath pictures are key to helping the surgeon and his team next week getting into the right place and making a game plan as to what they will go after first.

As we have previously noted, her pulmonary artery still measures on the small side. We were hoping it would have grown a bit more, but no such luck. However, the cath surgeon was quote "hopeful" that it was still large enough to be able to repair instead of replace. We definitely want to aim for REPAIR. Replacement of the PA means that she is guaranteed at least 3 more open hearts in her lifetime. While a repair doesn't guarantee that this is a one-shot, lifetime repair - it does lessen the chance that she will be on a surgery schedule until adulthood. So that was good news -- we'll take HOPEFUL for sure.

They also picked up that in addition to the large doubly-commited VSD that lies below the aorta and right ventricle, Quinn also has several (previously undetected) smaller VSDs located lower in the chamber of the heart. Not horrible news, just makes things a little more complicated. Dr. Fraser may decide to repair them or depending upon the size when they get in there, he may choose to leave them open and see if they close up later in life. It just depends - another one of those gametime decisions I love so much : )

A few people mentioned to me that they didn't realize that the cath was going to be so serious and intensive. Well, partially I may have down-played it a bit AND I also don't think we realized how lengthy it could or would be. I think anytime you put your child under general anesthesia for that long, it's pretty scary. Signing all sorts of consent forms that we understood the mutliple risks was pretty scary. Letting her go through those double doors with the team was extremely scary. And yet, when you compare it to the open-heart surgery coming next Tuesday, then it was less serious than that, and I guess that's where my focus was. I don't want to say that I was blind-sided but I definitely don't think I was 100% prepared. But I don't think you are ever 100% prepared for something like that. And yet, now that we are on the "other" side, I am actually grateful we've had this first step. We are more familiar with the layout of the surgical prep area & the waiting area. We know the things that will comfort Quinn (her shoes and headbands) and things that will not (surprisingly most of the toys and lovies we brought).

And without question, the hero of the day was Quinn. She was such a spunky, happy little girl all the way into the operating room. They told us she actually laughed until they put the mask on her. How that warmed our hearts to hear that. To know that she wasn't scared and just took it in stride. Oh, how I love her.

And then the nurses in recovery told us that babies this age either wake up really happy and totally fine OR they are just plain MAD.

Guesses to how Quinn woke up? Anyone? Anyone?

If you guessed royally pissed off (can I say that word? Well, I just did) - then you would be correct. Ha. Little girl could not be calmed. I don't think she was in too much pain, except that her throat probably hurt from the breathing tube. Combine that with some dizzying effects of the medicine and being attached to a zillion wires made for one very unhappy little girl. Broke my heart. And she just wanted her daddy. Thank God for Matt - he was such a calming force with her. We did everything we could to get her to relax and chill and hopefully get some food and water down her.

The only thing that finally worked?

Her shoes.

The child is obsessed with her shoes. As soon as we strapped them on or let her hold them, she grew happier by the minute. By late afternoon, she was eager to take down some cold chicken nuggets and mashed potatoes plus 2 nutri grain bars I had brought from home. Then finally the day caught up with her and I crawled in the crib and she fell asleep on me for a good hour (and I even caught a little nap as well).

Thankfully, her pulse in her left foot came back nice and strong (when she first was brought to recovery, they couldn't really feel it so they had to keep her on a Heparin drip to ensure she wouldn't throw a clot. Ummm scary, too). So once she had all of that to eat, all of her vitals were good, pulses were evident, we were released to go home by about 8pm. Thank God. I would have kept her overnight in a heartbeat if she needed it, but we were so grateful to get her home in her own bed for the evening. She again was an absolute angel the whole way home, promptly ate 2 containers of yogurt and was asleep 2 minutes after we put her in the crib. Oh, what a blessing.

Yesterday (Tuesday), she was still pretty funky in the morning --- very tired and clingy, understandably so. Her face was also very swollen (we are guessing from all the fluids pumped into her??) so she had a little bit of trouble chewing. Thankfully after two long naps, by 5pm yesterday she was back to her old self and had started to regain some of her face shape again. We were even able to take the twins out in their little cars for a spin around the block which they always love. And her brother was so happy to have her back. He obviously couldn't exactly tell me that, but I am just guessing : ) The sitter we had on Monday told us that Ryan was very good but just "out of sorts". He didn't really want to play or do much else except sit in her lap and cuddle. He was totally missing his playmate and their own twin language. That was hard to hear as well because it's going to be a weird couple of weeks post-surgery for him too. But for all of us, while it will be difficult, we WILL get through this - and prayerfully in another month or so, this was all start to seem like a bad dream with a wonderful outcome --- a healthy, happy daughter!

Anyway, as usual, probably more than you wanted to know - but wanted to keep you all posted. Thank you again so much for your prayers. We are completely humbled and overwhelmed by the outpouring of love.

Here are a few pics from the day:

Big girl ready for her surgery

She didn't want to sit still - she just wanted to go visit everyone!

Little one after surgery

Holding tight to her pink shoe

Finally calming down

Watching tv in her crib

Stuffing chicken nuggets down

Playing (this held her interest for a blessed 10 minutes)

Yes, we had a bow on her --- she loves accessories and playing with them. It was survival tactic :)

9.19.2011

It is very late, so this will be a short post (well, a short post in Meagan-style, which is probably long, but whatever).

WE ARE HOME.

There were several points during the day when we didn't think we would be home tonight. They had warned us it could go either way with a child Quinn's age. While we hoped we could come home, obviously if overnight was in store and in the best interest of Quinnie, that's what we would do.

I'll go into more details tomorrow (oh and YES we have pics - ha. Every event, catheter procedure or not is a picture-taking opportunity at the Clanahan's). This much I can say -- it was LONG day. Definitely good preparation for what's to come next week. And of course, H-town has not seen rain since pretty much February and we drove to the med center in an amazing thunderstorm. Well, it would have been amazing if we hadn't been freaking out so much about getting to the med center on time!

Everything went very smoothly with the pre-op procedures and Quinn was an angel. Seriously. I get so irritated if I don't have my diet coke and breakfast first thing in the morning - and this child was literally scooped up out of her bed, diaper changed and thrown in the car at 6am - no breakfast, no milk, no nothing. And literally not a peep out of her the entire way! And then she proceeded to roam the TCH halls in search of friends in registration and charmed about everyone on staff. Humbling. I was already weary - and this child who missed breakfast and was in a whole new place was literally putting on a show.

Anyway - fast forward so I can save a few details for when I am more coherent. The cath, which was supposed to be more "diagnostic" (taking pictures and the like to get a better idea of what the surgeon can expect next week), ended up being partial diagnostic and partial intervention. As previously suspected on her last echo, she did have a collateral vessel that had formed - serving no function but her body just made it in a futile attempt to try to bring more oxygenated blood into her system. Definitely not unheard of but we weren't sure if was actually there. Well, sure enough, during one our hourly updates (praise God by the way for the nurse Susan who called every hour on the dot to provide updates), we were told that it was indeed present and they were going to attempt to "coil" it off - more on that later. Anyway, it ended up being a very difficult location and a very difficult vessel to coil. The doctor spent hours trying to reach it and coil it -- and straight from her mouth, she was just about to give up, and "pop" - there it went in place. I'll explain more tomorrow why it was sooo important they get that coil in place.

Anyway - so a 3-4 hr cath "procedure" turned into an over 5 hour - and by the time we got to see her, it had been a good 6 1/2. Whew. Long time for baby girl to be under.

It took her awhile to regain her sea legs but once she did, she just wanted to move and go and play and was connected to all of these wires, and just couldn't. So she was so frustrated. Finally she decided it would be a good time to eat, so she took down some food and fell asleep on my chest for a good hour until they prepped us for discharge (I am leaving out a TON of details - feel blessed! ha!)

Most importantly, we are all home now and Quinn is doing great. I just checked on her and she is sleeping soundly after having yogurt snack at home.

Words cannot express the thankfulness I have to all of you who posted on facebook, sent emails, messages, texts, made phone calls and the like --- I was blown away by the sea of green on our page. (I'll post about that tomorrow too - for newcomers so you know why we wear green). Thanks and blessings to you all. We are immensely grateful for your prayers and know without a doubt, when they were trying to pop in that key coil, that prayers gave them the extra push they needed.

Love you all. Hope some (if any) of this makes sense. Will post on more than 4 hours of sleep and 14 hours of sitting next time :)

9.18.2011

I have so many thoughts running through my head --- and for once, I having a hard time expressing them.

Tomorrow is step 1 and just a small taste of what step 2 will be like.

We've (I've) made lists, laid out clothing, prepared food, packed bags - and we've definitely loved on the babies this weekend. Gigi is here and has been a huge help in letting me take a nap when needed, get organized, and prepare.

This morning we went to church, just Matt and I, for the first time in about 10 months. Typically we switch off Sundays so someone can stay with the children. But this morning, we were able to go together and neither of us had church duties to attend to which was lovely. We wore our Team Quinn green tshirts --- and when we walked in, we were greeted with some of our amazing friends also wearing their shirts, plus a handful of others who wore green in her honor. Wow.

To say I was overwhelmed with gratitude and humility would be an understatement. I am completely and utterly blown away by the people who continue to pray so faithfully for our little girl.

We love you all - Q had a great day today, loved playing with her Gigi, and wearing her brand-spanking new black Mary Janes, and was happy as can be. She ate a HUGE dinner and had 2 yogurts for "dessert" so I pray that she will remain someone satiated tomorrow as she cannot eat or drink after midnight.

We will post on here tomorrow or Facebook as we can. We expect nothing but this first step to go as smoothly has possible. We pray they get the best pictures ever to help the surgeons prepare for surgery on the 27th. The cath is fairly long, 3-5 hours expected for her to be under. 6 hours in recovery and then they will make the call whether to keep her overnight for observation or send us home. Knowing my little fighter, they will probably give us a good swift kick out of TCH tomorrow night and I will be so happy. This is NOT a child you contain in an 8' x 8' room : )

And I leave you with my favorite pic as of recent because it completely sums up her personality:

And her brother who will be rooting for her in green every step of the way. Love ya, sis!

9.16.2011

Throughout this journey of Q's diagnosis and preparation of her impending surgery, a constant prayer of ours has been that her life would be used for God's Glory in some way. I didn't know quite how that would happen, but I knew that part of my job was to share her story - on my blog, on facebook, with my friends, church, co-workers, and neighbors. I never wanted to share for the "poor us" sympathies and pray it never came across that way. I simply wanted to share how God has worked in our lives, in Quinn's life, to bring us closer to Him.

In this past year and a half, we have seem Him work incredible miracles in our little girl --- the biggest being the provision of time He has bought for us. Precious time for Quinn to grow and get stronger and more prepared for this surgery. There were more than a handful of times that we thought she was going to be taken to surgery --- they had prepared us that she may need one right after birth.

She did not.

Then they prepared us for one at 2 months.

She rallied and didn't need it.

Then 4 months.

Nope, not then.

Then FOR SURE it was going to happen by 6 months of life.

Again, God said "No, not her time."

And then a true miracle occurred --- the cardiologist blessed us with the words that she could wait a little bit longer --- and a little bit longer has turned into almost 16 months. 16 months of precious growth. 16 months of getting to spend time with my little girl, hugging her, loving on her, knowing her from the inside out.

And during that 16 months, we've had a chance to continue to share her story - and hopefully share a little bit about our faith in our awesome God.

And in this time, we've also had the wonderful blessing of building amazing friendships with others who have the same passion for Christ and trusting in Him through all circumstances. My dear friend, Amanda, has been one of those people.

And today, she was a huge blessing to me.

I was sitting at my computer, 100% stressed out about finishing a deadline for work. In fact, I have been a hot mess this entire week, trying to prepare to be out from work, get our family organized and ready for hospital stays, communicate with friends & family about what's happening, who's coming to stay, and the list goes on and on. I have been utterly consumed and quite overwhelmed, lonely, anxious, and ashamedly, feeling pretty darn sorry for myself.

Yuck. I know.

Then all of a sudden a post popped up on my facebook page with this picture.

It was a picture from Amanda's daughter's Kindergarten class. Amanda had shared with her daughter about Team Quinn and green being our team color. As they were learning about the color green in class, her daughter told them about little Quinn and her surgery. So the class all decided to wear green to support our child and family.

And oh my gosh, how the tears flowed freely.

All selfishness, exhaustion, and stress was wiped away by these sweet, sweet faces - wearing green and thinking about a little girl they've never met.

God IS reaching people through Quinn's story. Praise Him for that.

And if that wasn't enough, I FINALLY wrapped up most of my work, opened my blogger and saw this post from Amanda. It will tell you how we met and how they've prayed for our family. I don't think even I have the words to describe what it meant to me - and how her sharing our story on her blog brings such comfort.

Amanda, I love you so and cherish our friendship. Thank you for the love, compassion, prayers, and support you have given me over the past 15 months. Your strength and faith in God is an inspiration to me daily. LOVE YOU!!!!

To all of those who have sent me the most incredibly messages since our blog was on Kelly's Korner, thank you is not strong enough of a word. I felt for a moment that I was just floating in this pool of loneliness and despair - and every single one of you who read our story gave me strength. Thank you, God, for this crazy world of social media --- and thank you for people using it for such GOOD.

Y'all have a wonderful weekend. We are planning on cherishing every moment with our little miracles.

9.15.2011

Red beans are a cookin' and the babies are dressed and ready to play some ball. (On a Thursday? Yikes! Against Miss St? Yikes! At Starksville? YIKES!!!) Here's hoping that many of our LSU faithful plan to skip class tomorrow and head east to get their tailgating game faces on!

Hi, I'm Meagan. Follower of Christ, wife to an amazing husband, and mom to two miracle babies. I never imagined all of the twists and turns our life would take, but am grateful for every single one.

Meet my husband, Matt. The love of my life and partner in crime for almost 10 years. He is an amazing husband, incredible father, and the rock of our family. I am so undeserving.

Meet Ryan! A sweet, sensitive, cuddly little boy who brings endless joy to our lives. He is the resident comedian of the household, loves to play with cars, read books, and watch cartoons. He's also LOVES music and shakes his little booty anytime he hears it.

Meet Quinn. Our fiesty, energetic, sweet-as-pie, little girl. Her life is a miracle and true testament to prayer. You would never know that she has overcome so many obstacles. She loves her books, blocks, and is curious about everything! She is also our little helper and Miss Independent. She is also the current leader in the number of time outs :)